For decades, Gabriel Magnotta, the well-known Ontario wine-industry firebrand, went hunting with a group of friends. These expeditions took them into the wilds of almost every Canadian province. In time, three of the men would share something else: symptoms associated with “neurological” diseases—numbing of limbs, tremors, dizziness. Two were diagnosed with Parkinson’s when only in their 40s. Magnotta—co-founder with his wife, Rossana, of Vaughan, Ont.-based Magnotta Winery—was not as readily diagnosed. He began having balance problems in 2003, but test after test in Canada and the U.S. came back negative. Meanwhile, his health deteriorated: He had difficulty walking and talking, cognitive fog, double vision and intense joint aches.

In 2005, Rossana, who studied microbiology and worked as a lab technician early in her career, chanced upon a newspaper story about Lyme disease, an infection spread by ticks carrying the bacterium Borrelia burgdorferi. She read that the corkscrew-shaped microbe, a spirochete, can drill through tissue, then embed itself in the central nervous system, heart, brain, liver, spleen and joints, resulting in a raft of symptoms ranging from dizziness to paralysis. Lyme could explain Gabe’s symptoms, she realized, as she recalled seeing bites on his legs after hunting trips. The fact that the condition was treatable with antibiotics buoyed her: “I thought, ‘Finally this could be the answer,’ ” she says.

But getting Gabe Magnotta diagnosed and treated for Lyme would be an arduous journey, one that took the couple across continents and into an acrimonious medical debate. Lyme treatment guidelines, set by the Infectious Disease Society of America (IDSA), assert that the infection usually manifests in a bull’s-eye rash and is readily diagnosed through two-tiered blood testing: the ELISA (an enzyme-linked immunosorbent assay), then Western blot. Recommended treatment is oral antibiotics over several weeks. But Magnotta never had a rash; an ELISA taken in Canada came back negative. Further testing in the U.S. and Europe in 2006, however, confirmed Lyme. In Germany, he was told he also had three co-infections, also transmitted by tick bite, and was treated with an IV antibiotic not available in IV form in Canada. The Magnottas then found an American doctor experienced in treating chronic Lyme. Treatment was aggressive because diagnosis had taken so long, Rossana says: “Gabe had 45 sessions of hyperbaric pressure, trying to get antibiotics deep into his tissue.” By August 2009, he’d finished treatment and was on the mend, able to walk over a kilometre a day. Then, in December, he died suddenly of a heart attack. He was 59.

Discussing Gabe’s plight, Rossana, now president and CEO of the family winery, expresses sorrow and a steely fury. “The Canadian heath care system failed my husband,” she says, sitting in her office surrounded by a lifetime of awards and family portraits. “He only had an infection, and the infection should have been addressed in a country like Canada. But he suffered unbelievably. And I suffered watching him.” Heart failure was a known risk, given how weak his system had become, she says, adding that one neurologist wasted a year and a half investigating a “genetic condition”: “He sent us down a path that cost Gabe’s life.”

The experience has transformed Rossana Magnotta into an activist. Last year, she founded the G. Magnotta Foundation for Vector-Borne Diseases, which is funding Canada’s first facility dedicated to the research, testing and treatment of Lyme. It is slated to open in the fall of 2015 in the redeveloped Humber River Hospital. Solid, peer-reviewed research is needed, says Magnotta, who calls Canadian testing “a joke.” Animals are tested more thoroughly, she learned, when her dog received a routine Western blot at the vet: “Now, I love my dog,” she says, “but I love my husband a lot more. And I could not get a Western blot [for him] in this country if I cried or screamed or paid for it.”

Doctors aren’t to blame, she says: “They don’t know what to look for.” Canadian medical students are taught about tropical infections such as malaria, yet bacteria in their own backyard are ignored, she says: “We are a country of valleys and trees and forests; we need to be talking about Lyme.”

Magnotta joins a rising chorus of alarm about Lyme, and other vector-borne infections, one now being debated on Parliament Hill. Green Party Leader Elizabeth May’s private member’s bill, C-442, which saw second reading last week, calls Lyme a “national crisis” and proposes a “made-in-Canada strategy” to deal with it. The bill has all-party support and the backing of the Canadian Medical Association. That isn’t surprising. Chronic Lyme may not be a bona fide medical diagnosis, but most Canadians know someone touched by it, or have heard the harrowing stories of high-profile victims, such as writer Amy Tan and singer Kathleen Hanna. Advocacy groups, led by the International Lyme and Associated Diseases Society (ILADS) have called Lyme an unacknowledged epidemic for decades, one that leads to nerve damage, immune dysfunction, neurological deficits and miscarriage. ILADS rejects IDSA guidelines, saying a bull’s-eye rash often isn’t present, and clinical presentation can be blurred by co-infections, including chlamydias and babesiosis. Borrelia burgdorferi, they note, can lurk undetected in blood in a cystic form. All have potentially catastrophic consequences for public health. “Lyme-literate” doctors treat chronic Lyme with antibiotics over months, even years, often via IV—an approach the ISDA argues is “dangerous” and can lead to life-threatening allergies, liver damage, IV line infections and antibiotic resistance.

The result has been a medical standoff—and an underground Lyme treatment network that sees Canadians travelling to the U.S. and paying upward of $50,000 for treatment. All Canadian doctors who are vocal about treating chronic Lyme have been shut down, says Jim Wilson, president of the Canadian Lyme Foundation. “But you’ll never find they’ve been shut down because of Lyme, specifically.” Ernie Murakami, a physician based in Hope, B.C., who treated more than 6,000 people for Lyme directly and with other doctors, relinquished his medical licence in 2008 after what he calls “constant harassment and investigation” by the B.C. College of Physicians and Surgeons. Murakami, who now runs a foundation, lectures and directs patients to doctors willing to treat, doesn’t understand the resistance: “When it comes to chronic Lyme, there is pathological denial.”

The U.S., which has reported on Lyme incidence since 1991, has shown greater willingness to research and treat the disease (though doctors there have been disciplined). Seven U.S. states now permit doctors to treat Lyme with long-term antibiotics. Last year, a U.S. Centers for Disease Control and Prevention study reported that Lyme is far more prevalent than thought: 300,000 Americans are diagnosed each year—10 times higher than reported—making it a “tremendous public health problem.” The U.S. government earmarked funds in its last budget to research Lyme, with focus on “long-term complications” and developing “sensitive and more accurate” tests.

Similar urgency is not evident in Canada, where public health officials speak as if the bacteria and the vectors that spread it respect national borders. The Public Health Agency of Canada (PHAC) reports 833 cases since reporting began in 2009. CanLyme’s Wilson says incidence is “seriously under-reported,” noting his organization gets 3,000 new inquiries a year. Physician Geoffrey Taylor, the chair of PHAC’s Canadian Nosocomial Infection Surveillance Program, agrees that the rise from 128 cases in 2009 to 315 in 2012 is concerning. But he defends current protocols: “Based on what the evidence shows us, physicians in Canada are doing the best job they can,” he says. U.S. lab tests for Lyme are “invalidated,” he says, noting that “post-treatment Lyme disease syndrome,” the term given to those who experience symptoms after being treated with short-term antibiotics, requires research: “We don’t know what’s behind it,” he says. “It could be the immune system; it could be a number of factors. That’s typical when new diseases are emerging.” A PHAC spokesman likewise downplays risks of co-infections: “Although some cases have been identified in the northern U.S., the risk to Canadians is low,” says Robert Cyrenne.

A far more dire picture emerges in a 2010 policy paper from the Provincial Health Services Authority, by Brian Schmidt, its senior vice-president. The study, never released publicly but unearthed in an Access to Information search and available online, is a critical assessment that concludes Lyme diagnosis and treatment is “inadequate.” (Schmidt did not respond to interview requests.) A 2012 Health Canada bulletin also sounded the alarm, reporting that Lyme tests have “sensitivity and specificity limitations” and “should not be the primary basis for making diagnostic or treatment decisions.” It also reported 24 cases of “false negatives.”

That fact puts people with Lyme-like symptoms at real risk of misdiagnosis, says Magnotta. Lyme, dubbed “the great pretender,” mimics other conditions for which there is no known cause or cure, including fibromyalgia, multiple sclerosis, dementia, lupus, bipolar disorder and amyotrophic lateral sclerosis, or ALS. Many patients came to Murakami diagnosed with other conditions, he says, adding that 21 were in wheelchairs, which they no longer needed after treatment.

The centre funded by Magnotta’s foundation will house Canada’s first bio-repository, or human tissue bank, to test people who fit the Lyme profile. “That way, people will be able to get immediate help,” she says. Billions of health care dollars are being wasted, she believes, on revolving-door doctors’ visits and misguided treatments, tests and medication, which includes addictive painkillers, steroids, anti-depressants, sleeping pills and anti-psychotics: “My husband drained a lot of money out of health care. If we had just tested him the right way, we would have been way ahead.”

But the price isn’t only financial, evident in the dilemma faced by Arielle Arnold-Levene in November 2010: whether to follow doctors’ orders and undergo chemotherapy for a mysterious, degenerative condition, or pursue Lyme treatment in the U.S. The 24-year-old fourth-year University of Toronto history student first experienced odd symptoms that summer: She was tired and irritable; then the right side of her body went numb and her vision blurred. Up until then, she’d never been seriously ill or even taken antibiotics. Emergency room visits and neurologist consultations yielded no answers: “This was making sense to no one,” she says.

Even so, she underwent two gruelling rounds of steroids and a course of intravenous immunoglobulin. Her health declined; by the fall, one foot was paralyzed and she was experiencing electrical shocks down one side of her body, forcing her to quit as editor-in-chief of the school’s American Studies Undergraduate Journal and cut back on classes. A neurologist finally diagnosed her with “atypical aggressive multiple sclerosis” and told her to select an MS drug. When her symptoms worsened, Arnold-Levene was admitted to hospital for more tests, and possibly a round of chemotherapy. “They didn’t know what was happening,” she says. “They wanted to put me on drugs, but they don’t know.”

Lyme was ruled out early on after a negative ELISA. (Arnold-Levene recalled seeing a tick on her in New Hampshire in 2009.) But her father, a former university professor, continued researching Lyme, even after subsequent tests sent to a California lab came back inconclusive. Leaving the hospital was difficult, Arnold-Levene says. One infectious diseases specialist told her she could contract potentially fatal sepsis from the IV. He also warned her of unscrupulous players: “He said, ‘If they look for Lyme, they’ll find Lyme.’ ”

But she did leave to consult with Maureen McShane, an American doctor who lives in Montreal and practises in Plattsburgh, N.Y. McShane began treating Lyme after contracting it in the Laurentians in 2002. It took her almost a year to be diagnosed (one doctor said it was menopause), and two years to treat. Since then, she has treated more than 300 Canadians, many of whom are angry: “They’re incensed they’re paying for health care and being denied treatment,” she says.

McShane confirmed that Arnold-Levene had Lyme and co-infections, and sent her to a doctor in Washington, who put her on six months of IV antibiotics. The total treatment cost $30,000, says Arnold-Levene, who reports she’s now in good health and completing her masters at the University of Waterloo. She thinks about what her life would be like if she’d had chemotherapy, she says: “It wouldn’t be good. I don’t think I could have recovered.” Murakami agrees: “Steroids are the worst thing to give any infection,” he says, noting the result can be a Catch-22: “People with an MS diagnosis who have Lyme will get worse, which is chalked up to natural disease progression.”

Richard Horowitz, a physician in New York’s Hudson Valley who has treated more than 12,000 people with tick-borne illness over the past 25 years, sees current foundering over Lyme as symptomatic of a deeper medical crisis: the inability to deal with chronic diseases, which account for 70 per cent of deaths, and the lion’s share of health care costs.

It’s a topic Horowitz tackles in his 2013 book Why Can’t I Get Better: Solving the Mystery of Lyme & Chronic Disease, which claims the medical system is primed to provide care for acute conditions, such as heart attack and urinary tract infections, but not complex chronic illness. He blames “Pasteur’s postulate”—the “one germ, one disease” model taught in medical school. “Everyone is thinking in black and white,” Horowitz says in an interview with Maclean’s. But chronic illness is “multi-modal,” he says—with overlapping and compounding bacteria, protozoa, fungi, viruses and parasites. He calls for a “paradigm shift” in the form of his proposed “16-point differential diagnostic map” that assesses various contributors to chronic illness, among them sleep disorders, autonomic nervous system dysfunction, allergies, gastrointestinal disorders and liver dysfunction. Treating Lyme is not a one-step process, Horowitz says: “Patients with toxins, and/or adrenal or nutritional insufficiencies will never get well until all of those problems are addressed, too.”

Tick-borne infections are destined to affect future generations, Horowitz says, citing the arrival of Borrelia miyamotoi, a bacterium identified by the CDC last year that’s known to cause dementia-like symptoms and fetal death. He wants to see pregnant women tested for Lyme, because it has been shown to be transmitted to a fetus. Much remains unknown about Lyme, Horowitz says, including transmission. Medical research, including a 2011 study in Annals of Internal Medicine, shows tick-borne infections from blood transfusions on the rise; last year, the CDC sent out an advisory calling babesia in the blood supply a “risk.” Canadian Blood Services (CBS) allows people treated for Lyme to donate blood six months after exposure to tick bites, provided they “feel completely well” and are off antibiotics. Yet, people who have had malaria or have been diagnosed with MS cannot donate, and CBS asks prospective donors if they’ve had babesiosis, a Lyme co-infection that’s difficult to detect. CBS spokesman Marc Plante says the risk of contracting Lyme though blood is only theoretical. “To date, no case of transfusion transmission of Lyme has ever been documented.” Such claims do not reassure Murakami, who recently refused a blood transfusion after surgery to get his iron levels up. “I’m taking a risk of hepatitis and HIV, but also co-infections of Lyme,” he says. McShane is also adamant: “Unless I was almost dead, I would not accept a blood transfusion and, even then, it would be a difficult decision,” she says.

New research suggests blood may not be the only conduit. A study in the January 2014 Journal of Investigative Medicine found Borrelia burgdorferi in vaginal and seminal secretions of people diagnosed with Lyme, suggesting it could be sexually transmitted. One of the researchers, Calgary microbiologist Marianne Middelveen, began researching Lyme after being diagnosed and treated for it after decades of debilitating symptoms.

Stories of delayed diagnosis are common, says Magnotta, who expresses concern about anyone diagnosed with a “neurological” illness of unknown etiology. “A percentage, for sure, has some sort of borreliosis,” she says, noting studies have found the Lyme spirochete in the brains of Alzheimer’s patients. Magnotta recalls visiting an ALS clinic at a hospital where a doctor told her some patients had been in treatment for 25 years. She was shocked, given the average ALS lifespan is three to five years; she suggested they’d been misdiagnosed and should be tested for Lyme. “He ignored me,” she says. When she learned that two of her husband’s hunting buddies had been diagnosed with Parkinson’s, she felt a similar pang, she says: “Nothing I could say would be welcome.” Looking ahead, however, she expresses determination to confront a stealthy, pernicious foe. “I need to make sure my husband didn’t die for nothing.”

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Senior Writer Anne Kingston covers contemporary culture—investigating everything from medical politics to the politics of food. She is the author of 'The Meaning of Wife: A Provocative Look at Women and Marriage in the 21st Century' and 'The Edible Man: Dave Nichol, President’s Choice and the Making of Popular Taste.'

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The truth about Lyme disease

Thank you Anne Kingston for this great article and for Ms. Magnotta for all that she is doing to help raise awareness of Lyme disease in Canada. I am one of those people that never saw a bull’s eye rash or a tick bite. Even though I live in an endemic community in Nova Scotia and have travelled throughout the Northeastern US, Lyme disease never came up over the several years of Specialists and tests and the various illnesses that I had. It was a silly little diagnosis of TMJ that finally got me wondering what the heck was causing all these weird and wonderful symptoms that affected almost every system in my body. Once I started doing research, I was able to find a symptom list which I took to my Doctor. She then sent me for the ELISA which came back negative. When it did, she advised that, if I wanted to pursue a Lyme diagnosis, that I should go to a reputable place in the US like the Mayo Clinic. Being the stay-at-home Mom of 2 kids, I thought that there must be an easier solution and was able, upon further research, to find a local Doctor that was considered “Lyme Literate”. I was able to go to him for a year and a half and then he went on stress leave and subsequently retired. Rumor was that it was to do with the ongoing harassment by the College of Physicians and Surgeons due to his treatment protocol for Lyme disease and other illnesses. Since losing my Doctor, I have been trying to treat via a Naturopath but many symptoms have come back that make living a normal life somewhat difficult. With vision issues, hearing issues, speech issues, memory issues, etc., etc., daily living is not what is use to be. Any awareness that can be raised is a good thing. Thank you again for this article.

Great piece, Anne. My family’s own experience dealing with a long-delayed diagnosis of Chronic Lyme Disease (and a host of co-infections) means that this article reads like an autobiography, right down to the names of most of the Lyme-literate doctors you quote, and the out of date research quoted by the Canadian medical establishment. Thanks for shining a light on this. Many of us having been travelling a pretty dark, ignored path for too long, at a personal cost and a cost to the Canadian economy.

Thank you for this truthful article, Anne! It’s an utter disgrace and crime how lyme is treated in this country – or rather – not treated. I am one of those who has lived with an MS diagnosis only to initiate lyme testing myself and find out that I am lyme positive. Now what? So few choices and I can’t afford to be a medical refugee. We need doctors to step up to the plate and help us out.

Thank you Anne Kingston, you have captured the actual truth about what it is like to be a Lyme positive Canadian citizen. There are so many families in desperation, seeking a reliable testing, a knowledgeable doctor, treatment…all of which is NOT available in our ‘great’ country due to the Government!
During our last visit to my sons’ local family doctor in January 2014, to request the two tier Lyme test, a specialist, or anything…we were dismissed with the doctor saying to to my son “I suggest you go home, lose some weight and work on getting yourself better”! That is what our health care has come to… unacceptable! My son tested positive for Lyme and co-infections in February 2014 and the only way that was possible was through a private clinic at the cost of $2000.00. I have since connected with countless others, children and adults alike, who are suffering with Lyme disease. Their families are met with poverty trying to save them, while their hard earned tax dollars are being spent on denying them life!

It confuses, saddens and infuriates me. This has to STOP!

In light of the very accurate MacLeans story, I was quite shocked that Gord Brown, Member of Parliament for Leeds-Grenville, today provided an update on the government’s actions to combat Lyme disease.
“There has been significant interest in this issue recently so I am pleased to be able to highlight what we have been doing about Lyme Disease,” he says.
“Lyme disease is an illness caused by the bacterium Borrelia burgdorferi, which can be spread through the bite of certain types of ticks. Lyme disease in humans can have serious symptoms but can be effectively treated.” <<<<<<WHERE Mr. Gord Brown? I am requesting the address of where my son can be effectively treated for Lyme disease in Canada. Please post the address of this effective treatment location on your government web site so every Canadian may have access to this information…I'll be checking.

I just don’t get it…."politicks" is making my son and many others suffer without proper treatment. THIS IS WRONG!

Personally, I am well aware of the failure/lack of caring of the Canadian Health System, being forced to go to the U.S. for the treatment of CCSVI because Canada considers the condition of secondary/progressive Multiple Sclerosis to be “untreatable”. The same treatment of venous angioplasty is available for others, but not for people labelled with MS–so much for “universal” health care! I believe it is a strong possibility that I have been mis-diagnosed with MS and actually have Lyme disease, but do not trust the Canadian system to evaluate me properly. Following my great success with treatment for CCSVI, I am enjoying life now but am wondering if even more improvements could happen so I am saving up money to get checked for Lyme in the U.S. I hope Canada wises up!

I live in Victoria BC and I personally know 3 confirmed cases within 10 K of where I live. One of them is 5 minutes walk away from me. (Confirmed outside Canada by the way because the canadian system gave up on them. I also know several people on the internet with Lyme (another 3 in BC). If we actually count up the real cases, there are a hell of a lot of people out there going through hell. Chronic lyme people are buying high microscopes and confirming their lyme visually because the spirochetes come out of red blood cells after 10 to 15 minutes on a warm microscope slide. There are a number of videos on youtube that show this. Hello Canadian blood services?? Anybody there with a microscope? Physician Geoffrey Taylor, the chair of PHAC’s Canadian Nosocomial Infection Surveillance Program, when he says, “post-treatment Lyme disease syndrome” needs research is missing the blindingly obvious. Post treatment Lyme IS Lyme. It comes back if you do not kill it completely. I can only conclude after seeing this debacle and the “don’t touch her veins, she has ms” debacle that those who run the Canadian health system. (Those at the top), are Barking Mad. My wife had balloon angioplasty (in the USA) with amazing (verifiable) results, a 20 year old girl in Victoria with Lyme had balloon angioplasty with amazing results. So those at the top are both Barking Mad and absolutely deaf to suffering and to its relief. We need to cull them so that compassionate doctors and people that care about other people and not just about power can take over the health system. In health care, one and one often do make 2 despite what our medical leaders say. If you get a treatment and it improves your health?? One and one? leads to 2 : Then it is a good treatment. Not according to the barking mad dogs.

Thank you Anne Kingston for a brilliant article. You have told the truth about CCSVI/MS for over three years and now you are telling the truth about Lyme. The medical profession and Health Canada are, indeed, in “pathological denial” about Lyme and about CCSVI/MS. Consequently, Canadians with Lyme and CCSVY/MS are forced to become medical refugees to obtain testing and treatment that should be readily available in Canada. Canadians with Lyme may get lucky and may get the appropriate testing and treatment before those with CCSVI/MS for a simple reason: unlike MS, Lyme is not yet a multi-billion dollar a
year industry. I do hope Canadians with Lyme see the light at the end of the tunnel soon – before the pharmaceutical industry discovers them.

Thank you Anne Kingston for another brilliant article. It saddens me that people have to turn to the US once again for proper treatment (it happened with CCSVI). Canada must get on board and learn to diagnose and treat Lyme, before more people die or become severely disabled. The birds don’t know enough not to drop ticks here on their flight path, and they are also not stopped at the border. Canadian provinces border US states so it doesn’t take a rocket scientist to see it is spreading here. Our canines are receiving better diagnostics and treatment. What’s wrong with that picture! Pediatric MS is on the rise and the plaques shown with MS are almost identical to those from Lyme. Our doctors are not trained to recognize the difference. I would hate to see a child giving themselves injections and living a life of disability if it were found out to be Lyme, that if caught early would just take a month of antibiotics. I have had 3 negative Elisa’s and one very positive US Igenex test. If I sound angry it’s because I am. I have talked and met many who have also walked this path and it’s time for this particular path to end. I use to think that Canada had the best health care system, but they are so behind I wonder when they will catch up? How many people must die or lose everything before they do. I know I would like to be a member of society again and contribute. Most of all I would like to live again and not just EXIST! Its a lonely life, that didn’t have to be if Canada were more educated.

Thank you so much for covering this, you followed us through the CCSVI trials and tribulations and more than happy to see you joining us on the Lyme Journey, after being misdiagnosed with MS in 2002 it has been a very long journey and really do not have a lot of choice but to learn about your body and health yourself it’s just the way the Canadian medical system works which is not very effective they prefer to keep us sick thank God there are some Doctors who have some compassion and remember their oaths!

Wonderful article thank you very much. My ND believed I was born with Lyme then re infected in Kananaskis Country in Alberta. It has been almost 2 years since I became very ill and i still do not have a diagnosis from my doctor! I tested positive for Lyme in the states through Igenex Labs. My doctor will not even consider it a possibility. I fully expect that Elizabeth May’s Bill C-442 will pass this April, however it will take a long time before they figure out a strategy. Our doctors need to open their minds and except that this disease is in fact real and TREATABLE!! Again thank you for this wonderful article :)

At last someone is doing something about this awful problem. I too had (have?) Lyme disease, Babesiosis and another co-infection, no bulls eye rash. A friend visited me from Connecticut bringing her two horses and dogs covered with fleas and ticks. My dog and horse also got infected, their tests came back positive, mine was negative although I had all the symptoms. The horse died because of lack of proper treatment, the dog died soon after, lack of proper treatment again. I was treated in the United States by a doctor who had had Lyme disease herself, so she knew what it was like, and am still alive at 80 years old, but weak and not feeling great, but better than I was (maybe getting over all those antibiotics!) – and given my age I suppose it’s more difficult to recover. I had such difficulty getting doctors in Canada to take me seriously, they just thought I was a hypochondriac and gave up on me. Thank you Anne Kingston for such a great article. I wonder how many more people there are “out there” who have the same infections? Ms Magnotta is simply great doing all she can.

Hi Breeze!
Just a great comment that you posted! I am so happy that you are surviving this terrible condition. I am suffering as well. I have learned a great deal from Integrative doctors who post material on the internet. Dr. Dietrich Klinghardt knows a great deal. If you Google his nae and Lyme you will learn a so much. Doctors like him truly care about people and swim against the tide to continue helping those so ill. It is easy to love and respect such a medical/scientific individual.

I am a research subject there, previously diagnosed with Fibromyalgia, and will be travelling there in two weeks for my first clinic appointment, though I have had extensive blood tests and answered several in-depth questionaires so far.

The program is for people who suffer from a group of complex chronic diseases which include but are not limited to:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Fibromyalgia Syndrome; Lyme disease

Fibromyalgia may not be as controversial as Lyme, but there is still some and I have had a horrible experience with the medical system trying to get appropriate care. I’m hoping my involvement with the research program will change my negative experiences with the medical system into a positive one.

Yes, I am aware of the Complex Chronic Disease Program in Vancouver. But it adheres to the established treatment/testing protocols regarding Lyme questioned in the article. The centre in the newly developed Humber Hospital will be the first specifically devoted to research into –as well as testing and treatment protocols for —Lyme and vector-borne diseases based on the understanding that the status quo is inadequate.

Thank you so much for such a wonderful informative article on Lyme. There is so much misinformation out there, and this just about sums up the important parts. I am also one of those unfortunate ones who received a late diagnosis (almost 4years after symptoms began). It started with crippling insomnia, brain fog, bouts of sudden fatigue, anxiety, and hypoglycemia, the year I was completing my Masters degree. It was chucked up to stress and I was put on anti-depressants, and given sleep medication, told my labs were clean again and again , that it must be “in my head”, to just go home and rest. I got disillusioned and apathetic with the medical system and quit going to Dr’s when they continually dismissed me. I then went the alternative route to see a Naturopath, that diagnosed Adrenal Fatigue (which I also have) and started taking supplements and vitamins. From then on I would get a little better for a time, then crash again over the next 3 years. Never quite myself and living a full and happy life, but surviving. Until the final crash that has left me unable to work for the past year now. I finally found a Lyme literate Dr in Canada (rare as they are) but since there didn’t seem much likelihood I would have had contact with ticks living in the city (went camping a few times in Vermont, and Laurentians), and my ELISA came back equivocal, we continued treating for adrenal fatigue. I was getting slowly better (again), then I crashed like never before. It was like getting the worst cold in the world, that lasted over a month. I couldn’t even care for myself or get up from the couch. At this point I insisted I get the test, and soon later found out my Igenex test came back positive. I’ve had to move in with my parents because I can’t afford my apartment anymore. I haven’t been able to work in the profession I spent 10 years working my butt off studying to practice (occupational therapy). And the loneliness and isolation of this illness are really not to be overlooked. At least now I have a diagnosis and can start to have a dialogue with people about it, but because of the level of misinformation about it, it’s still a controversial topic. It’s definitely not straight forward. But at least now I feel like I can start talking about it. Before my diagnosis I was getting a lot of “so you’re just tired…?” It was so non-specific and vague and frustratingly compounded by mental health issues (which are a side effect of Lyme and not a diagnosis in and of itself thankyouverymuch). Now I am moving into various levels of anger and acceptance. Given the time frame, I now fit squarely into the “chronic Lyme” category, and therefore am hoping to see some improvement with this hardcore antibiotic protocol I’m on (2months in), but I am also a realist. I realize that even if I get well enough to work again, I will always run the risk of a relapse if I don’t baby myself with impeccable sleep hygiene, healthy diet, and lots of rest (not overdoing it is the most difficult thing about Lyme/Adrenal fatigue). It may take months or years for me to respond to the antibiotics. I desperately hope the information about Lyme will continue to get out through wonderful articles such as this one, to help educate and inform Canadians to both protect themselves from infection, and to be literate enough to ask their doctors about it if they suspect it. I applaud the work of Elizabeth May for trying to get a national Lyme disease strategy for better education, research, diagnosis and treatment for Canadians. Because the present state of things is frankly appalling. The “head in the sand” strategy of many doctors will come back to bite the whole health care system in the butt one day, and in the meantime it’s sick Canadians who are suffering. I am one of the lucky ones: I actually found a Doctor who told me about Lyme. Before that day, I never in a million years would have suspected I could have gotten it. How many unfortunate ones are still today sent home with anti-depressants and ending up on welfare? Never getting better? So despite everything, I do consider myself lucky, and tell others to keep hope and stay positive because there will still be good days, laughs to be had, and moments to enjoy despite all the suffering and frustration and grief and despair. I vow that when I am well enough to get back out in the world, I will be joining ranks with Lyme activists to spread the word. Thanks to all of you already out there championing for us. Thank you.

Hi Lindab:)
In my research I learned that only 50% of people with Lyme actually had the rash. I also learned that Lyme and co-infections can be transmitted by mosquitos and spiders and fleas and mites. One researcher from Germany, who has since passed away, felt that most people in the U.S.A have been exposed to the Lyme spirochete, but, that it is those with a weakened immune system who become ill. My advice to everyone is to keep researching the subject. I am trying something called The Salt Cure for Lyme. It sounds incredibly simple, but, believe me do you ever experience a powerful die-off. It is necessary to start slow. Make your own home-made sauerkraut and eat it daily. The enzymes in it really help. Bromelain from pineapple…another enzyme helps. Research ‘natural remedies for Lyme’. Learn as much as possible then find a knowledgeable Naturopathic or Integrative doctor. It is imperative to gain as much knowledge as possible.

You’ve once again jumped on a bandwagon that creates a financial hardship for people with undiagnosed illnesses. Your “liberation therapy” articles took a similar tone, and helped fast track useless science that took research money away from promising research into MS. You, personally, contributed to the bank accounts of countless quack surgeons in Mexico and Costa Rica, and once the science came in about the topic, you stopped talking.

You don’t trust doctors, and you don’t mention the profit motive behind this kind of BS. Ask the folks at that lab in California how many tests for Lyme come up negative? And then investigate their assay methodology. Then come back and talk about this.

Hello “Mostly civil:” I appreciate all feedback. To clarify a few points: The call for research into Lyme disease isn’t a random “bandwagon.” The US government has called for it; the Canadian Medical Association is supporting Elizabeth May’s private member bill for a national Lyme strategy; and Health Canada along with many of the doctors I quoted have acknowledged current Canadian testing protocols for Lyme are inadequate. The piece makes clear that an offshore industry has cropped up with Canadians paying in excess of US$50,000 for treatment in the U.S. As for negative tests from IgeneX lab in California, I spoke with six people tested there who tested negative for Lyme; the person quoted in the article had “inconclusive” results but pursued treatment nonetheless. If you have information regarding questionable assay methodology, please email me at anne.kingston@macleans.rogers.com and I will investigate.

Mostly Civil.
Please encourage in depth research into this illness. Anne is really onto something here. Interesting you should mention liberation therapy. In my research I discovered that folks diagnosed with Lyme, ALS and MS often experience scarring in the arteries in their necks. Thus, the relief from liberation therapy. Unfortunately, as long as the pathogens remain in the body the scar tissue builds up again. It is imperative that the infections are destroyed. Please Google Dr. Klinghardt and Lyme.

Thank-you very much for this article! I was recently semi-diagnosed with Lyme. Tests were done at a reputable clinic in the U.S.A. 2 Years ago I requested tests here in Canada that turned out inconclusive. Although the results from the U.S.A. were inconclusive, the plethora of symptoms and other pertinent blood tests all point to Chronic Lyme Disease. In my research I learned that Lyme spirochetes do not hang out in your blood. They dig into tissue. The only tme you might find them in the blood is around the full moon. So, blood tests should be done around the time of the full moon. Please Google Dr. Klinghardt and Lyme to learn a whole lot more about this subject. I am researching my own treatments online. I think that if a person does not do their own research into this and pursue alternative therapies they will continue to go downhill. In my research I discovered that often people who are both chemically sensitive and electromagnetically sensitive have Lyme. I also learned that Lyme can be spread by mosquitos and spiders, fleas and other biting insects. The co-infections are acquired at the same time as the Lyme. Please, folks, do plenty of research and find a good Naturopath. May I add, I have been working about 2 days a week to try and support myself. I have not thrown in the towel, yet. But, I get very, very tired. I count myself blessed to have friends who care. My closest friends are ones who are also sick like me. May all sufferers of this find the help and advice they need:)

Dear Anne, I have been researching some very valuable info out of the Vancouver Women’s Hospital Think Tank Conference on Lyme last year (2013). Please, everyone go to those Youtube videos for more knowledge. Dr. Rafael Stricker is very knowledgeable on this. He presents excellent scientific data on this disease. Here is the link:http://www.youtube.com/watch?v=RftuNfcFxB4&list=PLbSMktQUOGfVVSaMBLyTNPW59MrR2EKvg

Oops, I tried to post a comment and it disappeared! Here it is again: I have been watching some videos on Youtube on a Lyme Conference in Vancouver. The Women’s Hospital has a department for Chronic illness, including Lyme. There were some very knowledgeable doctors speaking there. Here is the link to the conference. It is well worth watching. Dr. Rafael Stricker is just excellent:http://www.youtube.com/watch?v=RftuNfcFxB4&list=PLbSMktQUOGfVVSaMBLyTNPW59MrR2EKvg

Very well written article. I won’t repeat what many have already said, by as a resident of the Niagara region living with Lyme, I agree that something needs to be done both within our health care and just to raise general awareness!

Another great link to a conference on Lyme. ILADS, 2013. The brilliant doctor speaking and explaining his protocol is Dr. Lee Cowden. Please, everyone with Lyme, listen to the conference. His protocol can be purchased in the United States.https://www.youtube.com/watch?v=c9t43NbIR2A

Thank you Anne Kingston for covering this story! It takes great strength and courage to do so!! Now, to look forward to 2015 and hopefully get some treatment instead of being housebound with no treatment or Physician available to help me, and unable to work in Heath Care since becoming disabled with Chronic fatigue, MCS, Seizures, digestive issues etc etc etc three years ago!

Lyme is definitely denied in Alberta, a province that never wants the world to find out any of its unpleasant secrets. I tested positive twice in Elisa tests for three types of Lyme Borrelia: Burgdorferi, Afzellii, and Garinii. I was then given a Western blot test but the only one I saw was a Euro immune one for Afzellii, which was equivocal. I don’t know why the others were hidden from me. I was then told I might or might not have Lyme. Yes, that is what is on my records and what will remain as I die from Lyme as a result of a refusal to obtain concrete diagnosis.

Because of swollen lymph glands and low blood platelets, I was given two weeks of Doxycyline100, which is considered the standard Lyme treatment in Alberta. I know that most scientists will not agree that this works. It doesn’t, and they know it, which is why they will never test you afterward to see if you still have Lyme.

I then got a Western blot test through IGenex and was positive for Burgdorferi. I had mega Lyme symptoms which was the only reason I asked for the test in the first place. No, I did not remember any specific rash or being bitten by a tick, but did own five cats and a dog. One cat (the one who brought home the most ticks), had to be put down because all she did was sleep all the time. No one knew what was wrong with her because no one knew about Lyme then.

So, now with positive Eliza tests, as well as a positive Western blot, Alberta still has the right to deny patients further treatment. They won’t accept IGenex results because they came back positive, and no test that comes back positive can be accurate. They will only accept Alberta’s own testing, and since this province is about 10 to 30 years behind the rest of the world in medical advancement, you can understand why we still claim we have almost no Lyme disease.

Patients should be able to sue provinces for killing them knowingly, by refusing to give them appropriate treatment. Why do cancer people receive free treatment? Why do AIDS people receive it? I had medical files three inches thick with serious problems from head to toe, proven in all lab tests, x-rays and MRIs, yet doctors are taught to recognize only a couple of symptoms of Lyme disease, which causes them to rule it out.

Personally I think most Infectious Disease specialists in Alberta are well aware that the province is in severe denial and that the number of Lyme cases may be as high as 100 times higher than Alberta admits, mainly because we have among the highest number of MS cases in the world and MS is often associated with and even misdiagnosed when it’s actually Lyme disease. My feeling is that Infectious Disease specialists are highly encouraged to NOT RECOGNIZE this disease at any cost, so as to not open up a huge Pandora’s box, in which they would find that most of our MS patients actually have Lyme disease.

It is not true that Alberta’s weather is so bad that ticks don’t like it here. The weather in Ontario is worse. It’s just that our medical training is so bad that professionalism doesn’t occur here.

How would you like it if your medical records stated that they were unsure if you had syphilis, and that was all they were going to say, so go away now and have a good day? My feeling is that if they are unsure, then there must be one heck of a deadly disease going around this province that is far worse than Lyme which they don’t want to admit.

Whether it’s poisoning from sulphuric acid or what, no one will ever know, but you would think someone in Alberta would be interested in medicine, and in getting to the bottom of this, but I don’t suppose they can when we are all covered by one insurance company. I don’t suppose the insurance company particularly wants to encourage diagnosis either.

It seems the Alberta motto is, “don’t test for things, because if you do, you will have to treat them.” As a result, many patients are becoming chronically ill before they are treated. It’s truly a shame that Alberta’s medical system which was once one of the best in Canada, is now getting close to being among the world’s worst as far as first world countries go.

All I hear in my head as I read this article were the words of doctors…Your symptoms don’t make sense…I have no idea…test after test…doctor after doctor (specialists included). I was treated in Canada for 28 days by an infectious disease doctor who did not believe in Lyme; but treated me anyway. At the end of the treatment he said…”if it was Lyme, it’s dead. Can’t be deader than dead. You don’t need any other treatment.” For someone that was CURED, I would love for him to face my children and confirm that as they help me navigate stairs, have watched me fall, help me dress…etc. I am receiving treatments, and in fact, my doctor is Dr. McShane in Plattsburg. I have been ill for over two years, but receiving treatments just for the last 8 months now. This disease is life changing undoubtedly. My children can attest to that. There are at least 6 others within a half hour radius of where I live with Lyme also, two of whom are children. Where is the hope? In all of us! Great article!

Thank you for this great article. Though I nor anyone I know have not been touched by Lyme disease I was left wondering if there was a link between Lyme disease and Alberta having the highest rate of diagnoses of MS. Food for thought.

Good Day. My husband told me about this article as I have Lyme’s Disease. I was diagnosed a few years ago. I had the bull’s eye rash on the back of my leg. When I went to the doctors office, the one doctor called in 2 other doctors, confirmed my rash, I got some antibiotics, cream and naproxcin for pain. I was not given a blood test. I have noticed different symtoms getting more pronounced as the years have progressed and some new ones popping up. I am in the progress of giving my kidney to my son. The Living Donor Clinic I am in contact with told me when they contacted the clinic I had went to for the Lyme’s Disease they told them I was never tested?? Blood test I am assuming ?? So they diagnosed me by sight?? Anyways, I was hoping that I would hear some good new, ” that I can donate my kidney to my son”. Keeping my fingers crossed. The Living Donor Clinic in Calgary is going to test me for Lyme’s and see if I qualify to donate. Please let me know of any information concerning organ transplant donation. More specifically Lyme’s Disease information on the subject. Thank you

Great article! We have run into this exact same scenario when trying to have our daughter diagnosed for PANDAS/PANS. Resistance by the medical community to even consider it (ironically lyme can cause PANS although we don’t believe that was the cause for our daughter). I’d love to see a story about that as well. Making families who are already suffering so much have to shop around and incur often huge expenses to try and find someone to help their children. Making us trade doctor’s name in backdoor internet rooms like drug dealers. It’s horrific and our medical community should be ashamed and we should all be alarmed.

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